Title of the register

    CLEMENS

    Name of Principal Investigator - Title

    Prof

    Name of Principal Investigator - First name

    Jean-François

    Name of Principal Investigator - Last name

    Démonet

    Address of institution -Institution

    Centre Leenaards de la Mémoire - CHUV

    Address of institution - Street address

    Mont-Paisible 16

    Address of institution - City

    Lausanne

    Address of institution - Postcode

    1011

    Country

    Switzerland

    Contact email
    Q1a. Please indicate below if your cohort includes or expects to include, incidence of the following conditions?

    Neurodegenerative disease in general

    Q2. In a single sentence, what is the stated aim of your register?

    Improve early detection and diagnosis of Alzheimer and related diseases using extensive neuropsychological, biological, imaging and genetic biomarkers

    Q2b. What distinguishes this register from other disease registers?

    Wide spectrum of clinical manifestation variables (neuropsychological assessment) together with biological biomarkers and imaging

    Q3a. i) Number of publications that involve use of your register to date

    Q3a. ii) Please give up to three examples of studies to date (PI, Institution, Title of Study)

    Q3b. If data on research outputs are already available please paste the publication list/other data or provide a link to where these data are publicly available?

    Q3c. If no research has been done as yet, please explain in a few sentences what information (i.e. research findings) you expect will be gained from the register

    Q4a. Study criteria: what is the age range of participants? Age in years: from

    18

    Q4a. Study criteria: what is the age range of participants? Age in years: to

    until death

    Q4b. Study criteria: what are the inclusion criteria?

    Consultation at the memory clinic

    Q4c. Study criteria: what are the exclusion criteria?

    Q5. What is the size of the register (i.e. how many patients have been enrolled)?

    1001-5000 clinical cases

    Q6a. Please describe what measures are used to characterise participants

    Q6b. Are there defined primary and secondary endpoints (e.g. defined health parameters)?

    If YES, please describe

    Q7a. i) Is the register of fixed duration?

    No

    Q7a. ii) Please enter the data collection start date

    01/02/2013

    Q7a. iii) Please enter the data collection end date

    Q7b. Could you provide some information about the data collection for this register?

    Data collection ongoing|Data analysis ongoing

    Q8. Funding of the register - How is the register funded?

    Q8. Funding of the register - Is this funding expected to continue

    Q8. Funding of the register - If so, for how long (months)?

    Q9. Could you provide information about data sweeping? - How many data sweeps have taken place?

    Q9. Could you provide information about data sweeping? - When was the most recent data sweep?

    Q9. Could you provide information about data sweeping? - When is the next data sweep?

    Q9. Could you provide information about data sweeping? - How many more data sweeps are planned on current funding? e.g 0,1,2…..

    Q9. Could you provide information about data sweeping? -How many more data sweeps are planned in total (with funding and with funding yet to be secured) e.g. 0,1,2…

    Q10. Is the clinical (phenotypic) information that is held in the register from patients and other participants such as family members:

    Routinely collected as medical records

    Q11. Is there a limit on the number of studies that can be based on this set of patients?

    No

    If YES, please give details

    Q12a. Please give information on the format and availability of data stored in a database (1)

    Data summarised in database

    % Available

    100

    Q12a. Please give information on the format and availability of data stored in a database (2)

    No

    % Available

    Q12a. Please give information on the format and availability of data stored in a database (3)

    No

    % Available

    Q12a. Please give information on the format and availability of data stored in a database (4)

    No

    % Available

    Q12a. Please give information on the format and availability of data stored in a database (5)

    Dedicated IT system

    % Available

    100

    Please specify language used

    Many

    Q12b. Please give information on how data is held as individual records (1)

    % Available

    Q12b. Please give information on how data is held as individual records (2)

    % Available

    Q12b. Please give information on how data is held as individual records (3)

    Data held on computer based records

    % Available

    100

    Q12b. Please give information on how data is held as individual records (4)

    % Available

    Please specify language used

    Many

    Q13a. Is data available to other groups?

    Yes

    Q13b. If data is available to other groups what is the access policy/mechanisms for access?

    Apply to PI or co-ordinator at resource|Access through collaboration with PI only|Local/ regional access|National access|International access|Access to industry|Access for pilot studies permitted

    Q14. What data sharing policy is specified as a condition of use?

    Q15a. Are tissues/samples/DNA available to other groups?

    Yes

    Q15b. i) If yes, please describe below:

    Living donors:blood|Living donors: blood derivatives|Living donors: DNA|Living donors: cerebro-spinal fluid

    Q15b. ii) In what form are tissues/samples/DNA supplied?

    Q15b. iii) Is the access policy/mechanism for obtaining samples the same as that for obtaining data (Q13b above)?

    No

    Q16a. Is information on biological characteristics available to other groups?

    If available for a subset please specify number of patients and % of total cohort

    Number of patients

    600

    % of total cohort

    25

    Q16b. If yes, is the access policy/mechanism for obtaining samples the same as that for obtaining data (Q13b above)?

    Yes

Types: Disease Registers
Member States: Switzerland
Diseases: Neurodegenerative disease in general
Years: 2016
Database Categories: N/A
Database Tags: N/A

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